Lighthorne pancreatic cancer survivor taking desperate measures to cope with medicine shortages

Pancreatic enzyme replacement therapy (PERT) is vital for people with pancreatic cancer – not taking it can leave them less able to tolerate treatment, with poorer quality of life and at risk of starvation.

A new survey by Pancreatic Cancer UK shows that 70 per cent of people affected by the disease are taking desperate measures to cope with the shortages.

Supplies of the tablets to the UK have been disrupted for over a year and this could last until at least 2026.

The charity estimates the shortages could be affecting at least 61,152 people across the UK, as people with cystic fibrosis, chronic pancreatitis and neuroendocrine cancers also rely on PERT.

Mike Moody from Lighthorne was diagnosed with pancreatic cancer in May 2023.

The cancer was successfully removed by surgery, but he is now dependent on PERT to digest food and absorb nutrients and must take multiple tablets with every meal.

Before the shortage, he typically took around 20 tablets a day, six for a main meal and three for snacks. His wife, Claire has been supporting him in sourcing his medication.

Mike, 75 said: “It makes me really angry that we have to do this.

"It’s totally unfair. We would be fine travelling hours if I knew there was stock for us to have, but you don’t know if your journey is going to be a waste; sometimes you get there, and they say they don’t have any at all or they can only give you one box – bearing in mind I usually need five boxes a month.”

“Without any PERT, I get debilitating symptoms pretty much straight away after eating. It stops a person from living their life.

"I'm always anxious and stressed about it, it’s just one more thing that’s been added onto our plate that we don't need.

"Our time is really precious for us now; we don’t want to spend it worrying about whether I am going to be able to get hold of PERT.

“Claire and I got married last July; I proposed before my diagnosis and we hurried the ceremony, as we didn’t know what was going to happen.

"Now we are left uncertain of our future, all because of the shortage of a vital tablet.”

Pancreatic Cancer UK is calling on the Government to develop an action plan to address shortages and the ongoing impact on patients.

The charity says it wants to see a taskforce – similar to the Vaccine Taskforce during the Covid-19 pandemic – deliver the plan and lead a national effort to import more PERT into the UK to meet demand.

Diana Jupp, CEO of Pancreatic Cancer UK, said: “Thousands of people affected by pancreatic cancer rely on taking PERT tablets every time they eat simply to digest their food and absorb nutrients – something most of us take for granted.

"That they are having to take desperate measures which can put their health, wellbeing and their eligibility for treatment at risk is totally unacceptable.

“For over a year we have been discussing the shortages with Department of Health and Social Care officials and PERT suppliers, urging them to prioritise finding solutions that reduce the impact on patients. But not enough progress has been made.”

“We need strong leadership from the new UK Government and a national approach to ensure that PERT is available when people need it.”

"It is critical that they take a more active role and explore all possible means to increase supply, including directly purchasing this vital medication from countries with a surplus.

"This situation cannot be allowed to continue.”